Added: 3 years ago
From: Denae1977
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  • I live life to the fullest becuase I never know when I might go into a seizure and if my eplispey will get worse. I may have a disease, but I will never let it slow me down and I support how you never let eplisey slow your daughter down.

  • Oh I forgot to mention what I have to be carefull of everyday and why I worry about having a sezuire. I have to be in complete control of my emotions at all times becuase if I lose control and get really angry or upset I can go into a seizure. Also I have to watch how much caffine I have, make sure I get enough sleep, stay away from strobe lights, etc. I have many triggers that can cuase a seizure, but I'm always carefull and my family and friends are there to help me.

  • (con) I may have a learning disability, eplipsey and understand things at a slower pace, but my diffculties in life have only made me stronger. These diffculties in life is why I'm studying to be a teacher becuase I want to prove to my students that life can knock you down, but you can chose whether or not to get back up. My point is that I wanted to say your an amazing family to help your daugther through life's problems. I hope one day she can show the world what she can do.

  • (con.) When I was younger I was on the early form of seizure meds and they delyed my learning abilties to the point that I had to be special ed classes becuase I had a learning disability. Over the years life became better for me and my family, but I never stopped fighting to prove that I could do anything I set my mind to. For years teachers, consulers, etc said I would never be able to read, write, or calculate math at my age level. Now I'm in my forth year of college studying to be a teacher.

  • You have a very beautiful daughter and I'm sorry to hear that your daughter has gotten worse. I have some idea what you go through becuase I was diagonosed with epilepsy when I was three or four years old. According to my parents I had a fever seizure and then these seizures devlepoed into petimal and now I live with Grand Maul epilepsy. I worry everyday when I wake up that I might go into a seizure that day. I'm on Keppra and that medication has been a godsend.

  • hello, a few months ago my 2 years old, he began to give very convulsions of your peers when it awakens princeza only happen at that time. would you help me with information. thanks and god is great .. your princeza forward.

  • Sorry to hear that your beautiful daughter has gotten worse, will def. be praying for her and you and your whole family, may God be with you all...will keep up with the website,

  • Wow your daughter is Beautiful..I cannot even imagine what you go thru on a daily basis, but you are doing a GREAT job as a mother to make her life as normal as possible...This was posted about 3 years ago how is she doing now?? I will be praying for you and your family..

  • @gramattmomMy daugther has gotten worse, she had brain surgery a year ago. She has a website we keep updated you can follow her journey there- caringbridge . org / visit / roo

  • Wow... this is an amazing video... I am in training to become a marriage and family therapist with a special interest in working with families like yourselves who have special needs children. I posted on another one of your vids. too. I have an 8 yr old w/Aspergers Syndrome, and a younger one with anxiety mood and now possible seizure issues. Nothing to the degree of your heather, but i see reminders of my 5 yr olds behavior in a lot of heathers. Thx for sharing your journey!

  • this video is very touching. My 4 year old son started having seizures in January. He is having complex partial seizures with the frontal lobe affected with cerebral palsy. He wears braces like your Heather. Thanks for posting this video. You are an amazing mom! Don't ever forget that - you are Heather's voice. Moms rock!!!! You will be in my prayers daily.

  • this video is very touching. My 4 year old son started having seizures in January. He is having complex partial seizures with the frontal lobe affected with cerebral palsy. He wears braces like your Heather. Thanks for posting this video. You are an amazing mom! Don't ever forget that - you are Heather's voice. Moms rock!!!! You will be in my prayers daily.

  • hi,I am from Serbia(Europe)and have epilepsy I got when I was 21 years old,now I'm 26 of years.Nobody in my family has this disease and doctors do not know why I have.But I have attacks in sleep!I have one more attack than doctors gave me medic eftil. I haven't 3years attacks,but thay returned!And I must again drunk medic...I fear that my children do not get it from me!

    Your girl is beautiful,and it can come out on its own as a child grows!Having hope and never give up!Much greeting for her :)

  • I cry when i so the video...poor girl :( Sorry the english im froom Norway. I have epilepsy to, but not that type. Hope she get's bether :) hug froom me

  • I don't know why it took me forever to find this video this is a very very good video, it Chronicles her journey from the very beginning up until now. Very thought out video

  • @SuperTashaC Thanks Tasha ;-) you know there are a few missing chapters. I have one from her brain surgery that I am working on, thats the hardest journey we have taken so far.

  • Your daughter is absolutely beautiful. I can't possible begin to imagine what you have to go through. You're all amazing people for devoting so much to her; my mom works with delayed children and children with severe epilepsy like this, and most of their parents simply aren't strong enough to be able to handle it. I wish the absolute best on your daughter and your family.

  • Thank you for your kind comments. Our daughter is amazing and deserves everything we can give her. She is really the one thats amazing. :-)

  • She's so cute with her red hair and freckles! Reminds me of Annie :). God bless your little angel!

  • my daughter also has seizures and developmental delay. What kind of delay did your daughter have? I also put mine on the ketogenic diet when she was 16 months old. She was having one myoclonic every five seconds since an infant. Once on the diet her seizures reduced to one in an hour and although we still have another eeg to confirm next month. I'm pretty sure its much less to zero now. She seemed not to care about the food but she is so young to notice (two next month).

  • how old is she that she still uses a pacifier? (not judging, i can tell your daughter is very special, and if she needs it, then she does. i'm just curious)

  • She had it until she was about 9, although we still have them in the house. Your right she does need it. Without it she will put things in her mouth and starts biting. We were able to transition her to what is called a "chewy" which is much more socially acceptiable now.

  • i have a few chewies too. those things can be helpful :)

  • Very good video. I'm not sure what the ketogenic diet consists of and what the portions are. All I know is that I've heard it's really hard on the patient. Can you explain??

  • My little girl is 17 months and has epilespy. My heart goes out to your family.Does your daughters heart stop with her's because mine does just wondering write me back.

  • Her heart has stopped after a seizure twice, she has what is called post ictal encephalopathy frequently. Her body basically shuts down. Her breathing and heart rate slow down and it lasts for hours longer than normal, the longest it has lasted has been 36 hours.

  • im all in tears for u and ur family ill keep u all in my prayers nightly praying for some kind of miracal god bless u sweet little angel ..

  • May God Bless her.... shes so adorable... dont worry "theres always rainbow after rain" ....

    Dont worry God is good He'll help her and if you keep believing in HIm and never let go off your faith she'll get better.. God has purpose for everything.. I do hope your little angel will get better soon.. Hope God will touch her and may God BLess her...

    wat does the causes of seizure anyway? an

  • Why did you stop the diet? It seemed to be working more than the meds. She is Beautiful and I love her Red hair! God Bless! <3

  • The diet is very hard to maintian for the individual who must eat the food. She was unable to understand why and how it was helping her. She was literally screaming all day long. It was not an east decision to stop the diet.

  • Oh, I'm sorry. I do hope that she can find something that will work for her! She reminds me of Strawberry Shorcake, that cute little cartoon girl. So very precious! You will be in my thoughs and prayers. <3

  • Your family's courage and tenacity is inspiring. Your little girl is adorable too! Best wishes to all of you.

  • Dear Denae and Riley. Another beautiful video. It is an honour to watch your story Riley. You are such a battler. With love from use all. Paul, Alison and Grant the champ.

  • thank you.

  • all the best, I'm 14 and I have had epilepsy since I was a baby.

    Chontelle

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